Thread by @Richard_Autism

You know it is dodgy viewing PDA to be an ASD, when even its supposedly "leading" experts acknowledge interest in PDA has outstripped its research...

Although, I am wondering how reputable they are as information sources. Sigh.

"In the UK, interest in PDA has increased rapidly over the last ten years, substantially outpacing research on the topic."

Considering: researchers & clinicians ethically should not predispose one outlook over another; conflicting views on PDA & divergent research results on PDA, which undermine PDA is an ASD. "Dodgy" viewing PDA as an ASD is bit of an understatement.

Which then begs the question, why are "leading" PDA experts viewing PDA to be an ASD?

Perhaps this indicates why:

"Research-based evidence such as this is critical in supporting the clinical understandings about PDA that have developed" (Christie et al, 2011, p186).

Bare in mind the book argues PDA is as an ASD, the research agenda that quote is commenting on views PDA as an ASD. The conference research agenda views PDA as an ASD.

The subsequent outlook the researchers took viewed PDA as an ASD.
repository.tavistockandportman.ac.uk/2165/

While attempting to make PDA a "meaningful subgroup of autism".
acamh.onlinelibrary.wiley.com/doi/abs/10.111…

And here:
link.springer.com/content/pdf/10…

Screenshot and link for first quote.
linkinghub.elsevier.com/retrieve/pii/S…

To contrast the decision to view PDA as an ASD in 2011, if one considers the debates surrounding PDA in the literature in its first 5 articles published before 2010.

Newson's first article in 1983 viewed PDA to not be autism. This was her consistent view throughout her research, including in 2003.
adc.bmj.com/content/archdi…

This is an addition to other acts & comments of Newson, like never basing PDA on the Triad of Impairment & excluding those who had autism features from her database.

"A few children whose clinical picture is less certain, often because of additional autistic characteristics, but atypical of autism also, were excluded." (Newson et al, 2003, p596).

"Clearly, “hanging together as an entity” is not enough
if that entity is not significantly different from both autism and Asperger’s syndrome, either separately or apart," (Newson et al, 2003, p599).

Bear in mind that both Garralda, and Wing & Gould comment on Newson's research saying PDA has no specific features & it remains to be seen if PDA is a distinct Disorder.
adc.bmj.com/content/88/7/5…

Garralda specifically suggests possible presence of:
"likely to have had co-morbid developmental and psychiatric problems,...

"...varyingly including oppositional defiant and/or hyperkinetic disorder or social anxiety disorder of childhood. In some cases the features described may have been precursors of a schizotypal disorder."

Garralda also challenges the clinical use of PDA.

Note this paragraph from Jones (2005) case study, it describes the differences of PDA to Autism & Asperger's, that PDA is a Pervasive Developmental Disorder.

I would point out, that if compares Newson's Pervasive Developmental Disorders Diagnostic grouping to accepted understandings of the diagnostic grouping, they are NOT the same.

Editorial of Christie (2007) states there is debate if PDA is an form of attachment disorder or personality disorder. Editor also mentions debate if PDA is a separate syndrome or not.
ingentaconnect.com/contentone/bil…

Christie does discuss some of the controversies around PDA, including Wing & Gould's comments that PDA is not a separate syndrome & its features can be seen in the autistic population.

Christie also mentions "'recognition of this subgroup with special problems is innovative and clinically valuable'."

Garralda (2003) made similar comment:
"The paper helpfully draws attention to the clinical variability amongst children with communication disorders."

Crucially, Christie acknowledges PDA does not conform to autism understandings"
"behavioural profile so cogently described and just
how different it is from conventional understandings
of ASD." p5.

Although Christie, is incorrect on Newson's accounts being cogent. Like, how do deficits in social identity/ pride/ shame cause panic attacks? Also many of the features in "Surface Sociability" trait are RRBIs, like panic attacks.

Worth mentioning in Christie et al (2011) it does mention some features of PDA make it problematic fitting into autism, like manipulative social demand avoidance behaviours. p12.

Suppose we go into 2011 a bit. Gould, with Ashton-Smith definitively views PDA to be an autism subgroup, & questions if it is a female form of autism.

"Dr Gould pointed out that features of PDA can be found in children and young people across the autism spectrum, but where they cluster they represent the PDA profile" p187.

Matching assertions in Gould & Ashton-Smith (2011), & partly comments made with Wing

Wing also comments on PDA in on page 30 in her 2002 book, that features of PDA can be seen throughout entire autistic population & so remains to be seen if PDA is a Disorder (syndrome).

Wing previously briefly describes Newson's 1983 work, in a paragraph of others attempting to create a syndrome and goes onto to comment ALL clinical accounts described in previous paragraph are not specific to those "syndromes". Frith 1991, pp 106-107).

Also worth mentioning in 2011, Wing, Gould & Gillberg question if PDA may not be caused by autism (p769).
sciencedirect.com/science/articl…

Final point before concluding. Newson's sample contained non-autistic persons in, as not all of them would have received an accepted autism diagnosis, this is reflected in comments in Newson et al (2003) & Christie (2007).

More recently it is accepted that some of Newson's cohort would not meet criteria for a DSM-5 autism diagnosis.

"most of the children referred were complex and
anomalous in their developmental profile and many
reminded the referring professionals of children with
autism or Asperger's syndrome." (Christie, 2007, p7).

"We, like others, were diagnosing these children as having atypical autism (stating in what way it was atypical);" (Newson et al, 2003, p595).

That not all of referrals for PDA diagnosis would have received a diagnosis of Asperger's/ Autistic Disorder is also mentioned on page 11 of Christie et al (2011).

Must also be said Christie in 2007, then with others in 2011 argues PDA should be viewed as an ASD & a prolongued debate on what PDA is a distraction from diagnosing PDA to help persons.

The reasons why I am covering debates over what PDA is in 2011 and earlier to set how "odd" it is that anyone would pursue a research agenda that views PDA as an ASD from that contested position.

First point, is neither Christie, or Gould in 2011 can say definitively PDA is autism. Newson's research, 2 case studies & their clinical opinion is NOT sufficient to view PDA as a form of autism.

Newson's research only really shows that PDA is different to autism, but she seems to take steps to ensure that would happen, like not basing PDA on triad of impairment & excluding those with autism features.

Not to mention that Newson's cohort has non-autistic persons in it & she argued they ALL required PDA educational strategies, praise/ reward/ punishments do not work with PDA.

Moreover, later literature acknowledges there is no consensus over what PDA looks like, or how to assess for it. So no-one can be sure definitively what the features are required for a PDA diagnosis.

Yet, Newson does detail her clinical threshold.
adc.bmj.com/content/archdi…

Despite Newson detailing her diagnostic threshold, no-one seems to have attempted to replicate it. Considering the acknowledged difficulties in comparing PDA diagnoses due to lack of agreed diagnostic criteria & validated tools...

... It is likely from the perspective of those making critique PDA might be a form of Personality Disorder/ Attachment etc, that their views are equally valid as Christie's/ Gould's etc.

Likewise, with Garrald's comments about PDA might contain features of ADHD seems to be valid, see Green et al (2018) & Egan et al (2020).

We also know that the EDA-Q, which Christie was involved with designing, detects PDA in non-autistic persons, including those with attachment issues/ aversive childhoods.

Links to two of the other screenshots. Kaushik et al (2015) is not available anymore publicly from my knowledge, so I tend to reference in Flackhill et al (2017).
ingentaconnect.com/contentone/bil…
&
autism.org.uk/what-we-do/pro…

"High SDQ conduct and hyperactivity scores plus a clinical diagnosis of anxiety were highly predictive of scores above the pathological demand avoidance threshold on the EDA-Q" (Green et al, 2018, p461-462).
thelancet.com/journals/lanch…

"This research indicates that, for community adult populations, self-reported individual differences in ADHD, emotional instability, and antagonism appear to better predict PDA than ASD."
sciencedirect.com/science/articl…

The EDA-Q is used as part of the assessment process for many CYP with PDA. For instance, it is part of the assessment pathway of Summerhill & Collett (2018, p29).
ingentaconnect.com/contentone/bil…

The point it is, it is hard to dismiss the critique of Garralda when it is being supported by research evidence. The tool which detects those features (while designed to detect PDA in autism), is widely being used in clinical practice.

Which highlights the absurdity of blindly assuming PDA is an ASD, as has been done by some since 2011.

There is NO significant justification for adopting that position 10 years ago.

To sum up PDA debate 10 years ago:
- PDA definitively is an ASD.
- PDA is not ASD (Newson's view).
- PDA is not Disorder (Syndrome).
- PDA does not conform to accepted autism understandings.
- PDA is not clinically useful.
- PDA is clinically useful.

- PDA may be a form of Attachment Disorder.
- PDA may be a form of Personality Disorder.
- PDA may NOT be caused by autism.
- PDA might contain features of non-autism constructs, like ADHD/ ODD/ certain anxiety disorders.

- CYP with PDA may have precursors for Sychozotypal Personality.
- Newson's cohort included non-autistic persons. All her research really does is show PDA is different to Asperger's & Autistic Disorder.

Despite this, some people have blindly assumed PDA is an ASD & pursued an evidence base to support that outlook. To the point now that interest in UK for PDA does NOT reflect its evidence base...

That is a damning for those involved in pursuing this agenda and outlook.

It is damning as they should not be favouring the outlook PDA is an ASD to the extent they have done, they should be taking a balanced approach to PDA, that does not predispose PDA to be an ASD.

I am in process of drafting a tool to screen PDA literature for balance & figured I should check rest of extant literature in 2011, only other article is Carlile 2011. See Editorial.
ingentaconnect.com/contentone/bil…

For the record, from my knowledge only other article was Carlile (2011) case study.

"Discussion and debate continue as to whether this is a different condition from autism, Whether it is perhaps the female presentation of autism (as more girls have been identified with the PDA profile than boys)...

... or whether it shares some of the key features of autism and so should be recognised as a part of the autism spectrum." p51

Also page 51 "There is limited available research and literature on Pathological Demand Avoidance syndrome (PDA)."

This establishes is that it premature (putting it mildly) to view PDA as an ASD in 2011. Note the part about debates if PDA is autism or not.

I am adding this to it, as it as I am basing the items of key points that were extant in the PDA literature in 2011. Which seems a reasonable place to base items on, considering it is from this point it appears an agenda to view PDA as an ASD starts.

Other draft items include PDA being distinct from autism.
PDA has limited or no ToM deficits.
PDA was originally a Pervasive Developmental Coding Disorder.
autismeastmidlands.org.uk/wp-content/upl…

That PDA might be a form of female autism, that is mentioned above, and I also think it is in the editorial of Christie (2007).

The ToM issues point matters, especially as the social demand avoidance is meant to be sophisticated, which contradicts later interpretations by some "leading" PDA experts. Newson & Christie et al (2011) also make similar comments to Carlile (2011).

The other final draft item is that persons can transition into PDA, this point is mentioned consistently by Newson, from 1989 to 2003. Wing makes same observation in 2002 & 2011, latter one with Gould & Gillberg.

The above point matters as it directly contradicts Christie's frequent conference presentation point that PDA has to be Developmental in nature.

"However, sometimes this child will more clearly belong to a typical cluster as time goes on and particular symptoms take on greater prominence" (Newson et al, 2003, p598).
Screen shot p771, link previously in thread.
Link Newson 1999
autismeastmidlands.org.uk/wp-content/upl…

I am also including an item on PDA meant to have different strategies compared to traditional autism ones, as this point is frequently made in the literature, even though I think point is highly debatable. It seems fair to include it.

I will post the draft tool on my blog later, I need to quite a bit of work drafting the tool first.

This thread details where the items are from and the rationale with the tool, which also is justified in the blog post:
rationaldemandavoidance.com/2021/04/30/a-d…

List of PDA articles, I checked was from here.
rationaldemandavoidance.com/2021/04/28/28t…

There was another link I wished to add to this thread, but I have currently forgetten it. I will add if/ when I recall it.

I was going to say, that I checked other sources outside those articles, such as three books which have in been drawn upon in this thread.

Reasons why I doubt PDA has separate strategies for autism can be found here:
researchgate.net/publication/33…

Saying this I could also cite Happe (2011), as she was involved in setting up that PDA is an ASD research agenda & co-authored various articles.

It is relevant, if you are trying to make PDA an ASD subtype/ subgroup/ profile, it is reasonable to discuss reasons why subtypes were removed from the DSM-5. Happe discusses this in the original research agenda conference slides. Slides 16 + 17.

Specifically, including items lack of evidence of differential treatment between subtypes. Subtypes were removed to reduce stigma for all autistics. Lack significant differences between autism subtypes.
jaacap.org/article/S0890-…

I have added an item to reflect that "Pathological" descriptor is controversial. Newson indirectly acknowledges this in her 2003 article & states she dislikes the name in her 1983 article.

I am also trying to group the items in a way that is easy for people to use them, when screening PDA literature. So items based on Newson's work are placed together. Likewise, issues with PDA being an ASD are grouped together etc.

I have basically copied the responses section to the Mixed Methods Appraisal Tool (MMAT), as this is the type information one should be seeking if investigating PDA literature's balance of perspectives.
…ethodsappraisaltoolpublic.pbworks.com/w/file/fetch/1…

It is actually worse than I thought. Certain "leading" PDA experts have also admitted PDA is a cultural based entity
link.springer.com/content/pdf/10…

"Since interest in the concept of PDA largely centres
on the UK, it is at present a culture-bound concept." (O'Nions et al 2020, p398).

What this means is that some people erroneously viewed PDA as an ASD, decided to pursue a research agenda PDA is an ASD. Subsequently interest in PDA has outstripped PDA research & PDA has become a culturally bound concept...

Likewise, "leading" PDA experts have acknowledged that persons can be on the look out for PDA. Which it seems fair to say some of them appear to be on the lookout for PDA to be an ASD. Furthermore, they they approach is shortsighted in the extreme.

"As such, it is likely that clinicians were not particularly ‘on the lookout’ for PDA features in their cases." (O'Nions et al, 2016, p418).
link.springer.com/article/10.100…

Sortsighted in the extreme quote and it being applicable to viewing PDA as an ASD.
researchgate.net/publication/33…

To be blatantly clear researchers should not be favouring the view PDA is an ASD over its other outlooks on it, as ethically they should be adopting the scientific-method and attempting to falsify hypotheses.
researchgate.net/publication/33…

It is an understatement, to say that viewing PDA as an ASD becoming an " culture-bound concept", SHOULD NOT HAVE HAPPENED...

At least there is more than sufficient case to warrant investigating undeclared conflict of interests in PDA literature.

@threadreaderapp please can you unroll?

Thank you in advance.

I should add an items to cover results of this, as they are discussed in Christie et al (2011), pp182-184.
journals.sagepub.com/doi/pdf/10.117…

I also think it is worth including an that anxiety is not an autism feature as this is Gould and Ashton-Smith (2011). Maybe an item on PDA demand avoidance being obsessive in nature, as this is how Newson described it.

The point here is that there is sufficient points in 2011 to seriously doubt PDA is autism... Which begs the question why no-one in 2011 bothered to make that leap of logic then?

In fact, I think if one was reflective enough, that something similar to this image could have been produced in 2011, suggesting how PDA compares to autism.

The difference in social communications issues is acknowledged (i.e., no ToM deficits. ADHD features been suggested. Conduct problems have been noted. Anxiety based demand avoidance & anxiety not being an autism.

Demand avoidance is obsessive in nature. Comfortable in roleplay and pretend, social manipulation are noted to counter autism understandings. are also noted.

There is sufficient points in the literature in 2011 to construct something similar to this.

Screen of anxiety being a co-occurring issue in autism, as mentioned in Gould & Ashton-Smith.

Christie et a (2011, p184) refer to PDA having high anxiety levels, within the top two percent of human population. Screenshot of PDA demand avoidance is meant to be linked to high anxiety in Carlile (2011).

Links to Carlile 2011:
ingentaconnect.com/contentone/bil…

Gould and Ashton-Smith 2011 article:
ingentaconnect.com/contentone/bil…

"whether it shares some of the key features of autism
and so should be recognised as a part of the autism spectrum" Editorial comment. Carlile (2011, p59).

I would say PDA does not have core features of autism...

That Newson seems correct to conceptualise PDA as having more clusters of symptoms, than Autism does...

Points I need to cover:
O’Nions Masters thesis.
Autistic-like is not equivalent to autism…
Obsessive Behaviour.
Anxiety based behaviour impacting social interactions, can cause chaotic worldview seen in some persons with PDA...

Anxiety driven behaviour impacting social interactions can is seen in anxiety based Disorders, like OCD.
Routines.
Difficulty measuring some PDA features.
Educational Strategies.
Not all of Newson’s cohort meet DSM-5 autism criteria.

"Obsessive behaviour: Much or most of the behaviour described is carried out in an obsessive way, especially demand avoidance:" (Newson et al, 2003, p597).
adc.bmj.com/content/archdi…

"Praise, reward, reproof, and punishment ineffective; behavioural approaches fail." (Newson et al, 2003, p597). Newson describes educational approaches in supplementary notes. Christie (2007), & Christie et al (2011) detail educational approaches for PDA.

Likewise, Carlile (2011) suggests different educational approaches are needed for PDA versus "traditional" autism ones. Although, as I mention earlier, I think this statement can validly challenged.

"Some of the features outlined (for example sense of identity, price and shame) would be specially difficult to identify reliably." (Garralda, 2003).
adc.bmj.com/content/88/7/5…

Not all of Newson's cohort meeting DSM-5 autism criteria. (Eaton & Weaver, 2020, p34; Soppitt, 2021, p311).

Now onto O'Nions master's research, as discussed in Christie et al (2011, pp182-184).

First point mentions PDA might be a "double-hit" p183, similarly to Wing et al (2011) does, but also adds top 2% of population for parent-rated anxiety p184.

This means PDA can be described as a "triple-hit" of autistic-like features, conduct problems & anxiety in 2011. Issue here is that means PDA cannot be something it is more than. A + B + C ≠ A, i.e., PDA CANNOT be autism.

Even if PDA is a "double-hit", same logic applies, that PDA cannot be autism. This is just indicating a lack of critical engagement by Christie et al (2011), other comments of theirs also suggest a lack or robust engagement which I will cover in a moment.

Page 183 discuss features are associated with ADHD, like impulsivity and poor planning, which support critique of Garralda that CYP with PDA might have co-occurring ADHD. Hyperkinetic Disorder is ICD-10's name for ADHD.

Must be said neither Christie (2007), or Christie et al (2011) reference Garralda (2003). So make of that what you will.

Christie et al (2011) mention that persons with PDA scored similarly to autistic CYP on "autistic like traits" and discuss how the scored differently. Mentions PDA tends to have better eye contact than autism.

My issue here is that "autistic like traits" does not make a person autistic, or mean that PDA is a form of autism. It is possible for autistic persons to be misdiagnosed with things like BPD because that dx has social interaction issues.

It is possible for non-autistic persons to be diagnosed with autism, like those with "quasi-autism", due to attachment issues.
ingentaconnect.com/contentone/bil…

Likewise social communication issues and struggling with social interactions are common childhood disorders, and can be found in constructs like, attachment disorders ADHD, ODD and Conduct Disorder; all Disorders which overlap PDA...

It is at least premature to argue that PDA is an ASD based on "autistic like traits". At the worst irresponsible to do so.

Christie et al (2011) p183 also mention how CYP with PDA scored higher than autistic CYP on "imposing routines on themselves and others". This important as it challenges stereotype that those with PDA dislike routines & structure.

This supports research by Elizabeth Newson that 60% of persons with PDA adhered to routines, see page 4 (Newson, 1998).
autismeastmidlands.org.uk/wp-content/upl…

I cover this point in this article.
researchgate.net/publication/33…

Right, the point about autistic persons being misdiagnosed with BPD. One could argue that those with BPD have "autistic-like traits", if so many autistic persons are being misdiagnosed with it (not that I think anyone should).

Most Disorders in the DSM-5 contain:
"the disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning." (APA, 2013, p21).

It is perfectly reasonable for anxiety driven behaviours to cause social interaction issues, and PDA to NOT be autism.

Considering Eaton & Weaver (2020) are arguing anxiety driven demand avoidance behaviours are impacting ADOS scores, one can easily adopt this position relating to some persons with PDA, at some PDA diagnostic threshold (there are several PDA dx thresholds).

For instance, the line about anxiety driven anxiety behaviours impacting social functioning is present in OCD.
ocduk.org/ocd/diagnosing…

I think the final point here, is that if one is consistently expressing anxiety driven behaviours, & it is impacting their social interactions; it is likely to also impact the development of person's worldview & understanding of the world.

This is point is covered by Donna Williams in 2008. I am not expecting anyone to particularly know of her work in 2011. Yet, if one is taking a transactional approach to a CYP development, it makes sense.
blog.donnawilliams.net/2008/06/17/exp…

Donna Williams also makes a good point, that if someone is that anxious most of the time, they will be often be mentally exhausted and little mental energy left to focus on social interactions. Which again, I think is pretty obvious & straightforward.

Some might argue I am being harsh for using sentence from DSM-5 Disorders & 2013. Yet, workgroups working on DSM-5 were present in 201, including the one Happe worked on for autism. DSM-5 aimed to have consistency in Disorders across from DSM-4 to DSM-5.

So this information is highly likely to have been publicly available in 2011 and I the point about anxiety driven features impacting social functioning is OCD DSM-4 criteria (APA, 1994, p423).

So the point about anxiety driven behaviours impacting social interactions etc, does not mean PDA is an ASD appears to be valid.

I will add further items to PDA-BLT later. I needed to cover the literature review.

@threadreaderapp please unroll.

Thank you in advance again.